One woman's quest for better health… living with lymphoedema

Tag Archives: secondary Lymphoedema

First Patient Dosed in Secondary Lymphedema Study
Andrew Black
Published Online: Monday, Jul 25, 2016
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Eiger BioPharmceuticals dosed the first patient in the Phase 2 Ultra Study of their drug Ubenimex in patients diagnosed with secondary lymphedema. The Ultra study is designed to assess the effectiveness of ubenimex blocking the production of Leukotriene B4 (LTB4).
Ultra Study
The study will evaluate the effects of ubenimex in patients with secondary lymphedema of the lower limb(s) who are optimized on physical therapies. The Ultra Study is a multi-center, randomized, double-blind, placebo-controlled Phase 2 trial assessing 40 patients that will be randomized to receive either 150 mg of ubenimex or placebo three times a day over 24 weeks.

Leukotriene B4 (LTB4) is a naturally-occurring inflammatory substance known to be elevated in both preclinical models of secondary lymphedema as well as human lymphedema disease. Elevated LTB4 causes tissue inflammation and impaired lymphatic function. Targeted pharmacologic inhibition of LTB4 promotes lymphatic repair and reverses lymphedema disease in treated animals.

Ubenimex is an oral, small-molecule inhibitor of leukotriene A4 hydrolase, which regulates the production of leukotriene B4 (LTB4), an inflammatory mediator implicated in PAH. LTB4 is produced from leukocytes in response to inflammatory mediators and is able to induce the adhesion and activation of leukocytes on the endothelium, allowing them to bind to and cross it into the tissue.

Ubenimex is also currently being evaluated in a Phase 2 study for the treatment of Pulmonary Arterial Hypertension (PAH).
Secondary Lymphedema
Secondary lymphedema usually develops as a result of a lymph vessel blockage or interruption that alters the flow of lymph through the lymphatic system and can develop from an infection, malignancy, surgery, scar tissue formation, trauma, radiation, or other cancer treatment Radiation therapy can damage otherwise healthy lymph nodes and vessels, and can cause scarring of the lymphatic vessels which leads to fibrosis and subsequently diminish lymphatic flow.

Always excited to see any research into treating and curing Lymphedema …

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Good morning everyone,
This is week 5 post op from Dr. Chang– I will be going for re-measurement of my left leg this week and I was told that prior to going for re-measurement, I should make the leg be as small as possible, so that I can get the max amount of support from the new Elvarex for which they are measuring me. The therapist told me to make sure the night before going I use the flexi-touch, then put on the quilted night-time garment on and on top of the quilted garment, wrap the comprilan wrap around the quilted garment…..I should go to her the first thing the next morning while I still have the comprilan wrap on so that I get measured at my lowest possible measurement and in this way, give full support to those new lymph nodes which are growing…..Wow–I guess they know what they are talking about..I even passed that by Dr. Chang’s therapist, Betsy.
By the way, I got my estimation of benefits, (EOB) 2 days ago for the cost of the surgery…anyone have any guesses on the cost of this surgery??? Thank God for insurance…
That is my plan for this week–the hottest days of the summer -in the mid 90’s..AND I have jury duty on Thursday—lol–keep on keeping on….Liz

Thanks for your latest update Liz.. It is great to hear your step by step progress… Thanks Helen

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This morning when I was checking the Lymphoedema pages and groups on Facebook I saw this post from Kristin who runs the Newcastle Lymphoedema Clinic. http://www.facebook.com/pages/Newcastle-Lymphoedema-Clinic/213474748824277
March is Lymphoedema Awareness month and it seemed a pity that her article would not be seen, in the Newcastle Herald, having taken the trouble to write it. Therefore I offered to post it on this blog so that people can learn the early signs of Lymphoedema. Please find the link to her web site at the end of this post.

Complex Lymphoedema Therapist – Lymph Drainage, Compression Garments and Bandaging, Laser, Kinesio Taping, Exercise, Diet and Travel Advice. Australasian Distributor of the Reid Sleeve Compression Garment and holding the Largest Lymphoedema amd Lipoedema Products Range in Australasia.
“I am excited to share and help you with the latest in Technology, Education, Techniques and Advice assisting and correcting the way your Lymphatic System works.” Kristin Osborn …. Kristen is also the guest speaker at the Lipoedema conference held in Sydney..

“Wanted to express how disappointed I was about creating awareness for Lymphoedema Awareness Month March. I wrote an article to go into the Newcastle Herald with a pull-out section for who might get Lymphoedema and the “Signs and Symptoms” for people to look out for and in all the wonderful wisdom of the journalist, she decided to cut it to pieces and put it in a place where no one could find it!, so much for creating awareness.” Kristen

This is the article originally writen for the Newcastle Herald

National Lymphoedema Awareness Month March 1—31st
“It’s Cool to be Kind”

Lymphoedema is a progressive chronic disorder of the lymphatic system. It occurs when the lymphatic circulation fails to function correctly, causing severe, painful and debilitating swelling. Early diagnosis and specialised management is the primary effective treatment. Lymphoedema usually affects the limb(s) but can affect the trunk of the body, head, breast, neck and the genital area.

There is no cure only management using Manual Lymph Drainage, compression garments and complex bandaging. Lymphoedema affects people of all ages and if not treated early can lead to regular hospitalization , due to infections and have devastating effects both physically and emotionally. Only early diagnosis and treatment can reduce the progression of lymphoedema to minimise its impact and limit complications.

There are many causes of lymphoedema, including some people born with a genetic predisposition. (Primary Lymphoedema) These people may develop lymphoedema at any stage during their life, mainly during major hormonal cycles of puberty, pregnancy and menopause. In addition, any major damage to the already fragile lymphatics caused by surgery, (Cancer, Cosmetic, Knee and Hip Replacements, Broken Bones, Parasitic infections and Venous issues) can cause Lymphoedema to start.

Secondary Lymphoedema is caused by the treatment for cancer, where the lymph nodes are removed or damaged and patients undergoing radiation therapy. This is often seen after Breast cancer treatment or gynecological cancers also Melanoma removal and Prostate Cancer. In fact any treatment where Lymph nodes are removed for what ever reason. However if diagnosed and treated early, this distressing and debilitating disorder can be controlled and reduced, infection prevented, range of movement of the affected area can be improved and the quality of life can be greatly enhanced.

People who are at risk of Lymphoedema, either due to a genetic predisposition (family history) or after cancer treatment, should be aware of the early signs. Many people experience early symptoms of lymphoedema but don’t recognise them so it is vital that these high risk people learn the signs of lymphoedema and seek early diagnosis and treatment.

Early signs and symptoms of lymphoedema can be intermittent or permanent and may include:

1. Intermittent or permanent swelling of the limb
2. Infection
3. Feelings of heaviness and stiffness
4. Limitation of movement
5. Temperature changes of the skin
6. Tightness of Jewellery, Clothing or Shoes
7. Swelling may worsen due to heat, over use, sustained positions and prolonged inactivity or become more obvious at the end of the day.

For more information and assistance please contact Kristin Osborn at Newcastle Lymphoedema Clinic on 49 20 70 10 or visit the website at http://www.newlymphclinic.com.au/

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I saw this article via LinkedIn and it reminded me that Lymphoedema is not just something that happens to arms and legs, it can occur in any part of the body. This can be the result of secondary Lymphoedema or Primary Lymphoedema. For obvious reasons LE of the head, neck, abdomen, trunk and chest are much harder to treat. MLD becomes difficult and custom-made garments can have problems fitting correctly. When more than one area is affected people experience physical problems as well as a compromised Lymphatic system. There is little support or emphasis on LE for areas other than arms and legs, therefore it is great to see this article which is a patients guide to head and neck Lymphoedema.

Patient guide to head and neck lymphedema following cancer treatment
By Ryan Davey
Scientist and Business Owner

We just completed a little summary of the latest research on head and neck lymphedema (HNL) and thought we might share it with the group. The prevalence of HNL is very high in patients treated for head and neck cancer, but there isn’t a lot of information available on the condition, nor are there many clinical studies. If you’re interested you can find our patient guide here:

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Lymphoedema Awareness

I am writing this blog to keep a record of my Lymph Node Transplant in the hope of inspiring and helping others.
I wish to bring awareness to the issues of Lymphoedema so that people will better understand this very difficult and little understood health problem. We need more research and a brighter outlook for those with both Secondary and Primary Lymphoedema.
Items in this blog are to only be used in conjunction with a medical diagnosis and with a treatment plan specific to your needs. Please check with your lymphoedems specialist if you are feeling unwell or unsure about treatment and care.. MLD should never be used if you have an infection..Please share this blog with your friends and family... Thanks

Feel free to share with others.. it can be distributed via social media, reblogged or added to websites.. please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog
https://lymphnodetransplant.wordpress.com/ Thanks